Have you been helped with CFS by Mayo Clinic?

Discussion in 'Fibromyalgia Main Forum' started by Renae 2, Sep 22, 2003.

  1. Renae 2

    Renae 2 New Member

    My daughter was at Mayo earlier in the development of this disease, but nothing could be done. Now that D has more recognizeable CFS symptoms, I checked their website, and I am wondering if the autoimmune specialty group, neurology, sleep center, etc could help?
  2. doctordoubter

    doctordoubter New Member

    During the past year I took my teenage son to Mayo Clinic. He had "the works" including MRI and many blood tests and I would say mainly it confirmed in my mind that he does have CFS/FM rather than anything else. But Mayo is a rather conservative medical institution and doesn't even have an entry for CFS in their thick medical encylopedia. Yet at their patient information center you can pick up a packet of info about CFS from the Minn. CFIDS association. I think that the problem is that some of the doctors in authority there know nothing about CFS/FM and still question its existence as a biological illness, while other doctors have had enough patients that they realize their patients aren't crazy, since all show up with the same constellation of complaints. We were lucky enough to see one doctor who had seen several cases and actually prescribed 6 months of antibiotics, because my son's C. pneum and M. fermentans tests were PCR positive (not done at Mayo, labs before we went). Yet in my son's records written by this same doctor, never does the phrase "chronic fatigue syndrome" appear.

    If there is any doubt whether someone has CFS/FM vs a brain tumor or something else more conventionally horrible, then Mayo is worth a visit to rule out another illness. Also if you have a chronic sinusitis that might be fungal, then certainly an ENT at Mayo is worth seeing (ironically, many conservative ENTs not at Mayo still don't believe Mayo's unexpected finding that sinusitis is often fungal rather than bacterial).

    But otherwise I think you'll be better off with a doctor or clinic who has treated a number of CFS/FM patients.
    [This Message was Edited on 09/22/2003]
  3. jrsinc

    jrsinc New Member

    During a visit to Mayo, two separate doctors diagnosed me with FM. Yet, they never provided any information or offer of assistance. I went for a pain issue and the reports sent to my regular doctors never even mentioned this diagnosis. It may have just been an oversite by the doctor overseeing my case. Hopefully you'll get better results. (Forgot to mention...they did arrange an appointment with a shrink...that was truly encouraging - yeah, sure, un-huh - like this is all in my head.)

    Warm fuzzies,
    jrsinc
    [This Message was Edited on 09/22/2003]
  4. Renae 2

    Renae 2 New Member

    Your replies are helpful!

    I saw under the autoimmune group...a listing of symptoms, including symptoms we would all recognize as are common with CFS...such as sweating,etc. I wondered why Mayo would list those if they could not provide symptomatic relief.

    D is so tired of all the tests/doctors she's been exposed to and nobody could help her. I will have to come up with a good reason before she's willing to be dragged through more.

    A therapist who deals with chronic illness patients felt that D should see a certain doctor she knows of who is an expert in neurology but also knows homeopathic helps too. Maybe that's the way to go now...

    Thanks again!!
    [This Message was Edited on 09/23/2003]
  5. Ahorsesoul

    Ahorsesoul New Member

    Mayo Clinic in Rochester, MN flunks FM 101 in my opinion. I went to their 3 day workshop on FM. I was checked out my several doctors who did confirm that I had FM and arthritis. But the workshop was three day long, like anyone with FM can sit that long or listen that long. I did learn that I was doing way too much. They also said there is no treatment or diet that helps FM! They offered no real treatment. I was deeply disappointed, this was about 2 or 3 years ago (can't really remember, I have FM--LOL) so maybe they have improved their program. I do love the Mayo clinics, they do check out a whole person and their symptoms. It does give you some relieve to know you have been checked out by the best. If you think you daughter is getting depressed about this horrible disease, I would take her. I still go there when I have a problem that I want a second opinion. I kept searching for something to make me feel better and finally found Dr Vrchota at the Wabasha Clinic, MN. I am feeling great now. There is hope out there, finding it is the hardest part. Good Luck
  6. Renae 2

    Renae 2 New Member

    What did Dr Vrchota do to help you?
  7. Ahorsesoul

    Ahorsesoul New Member

    She helped to a lot. I have not felt this great in years. I now say I feel like a 20 year old (I'm 52) but my body is still out of shape. I have started exercising, something I have not been able to do. If you do a search on Questran or ahorsesoul, you can read what I have written about what this stuff has done for me.
  8. lucky0003

    lucky0003 New Member

    I have been to Mayo to find out what was the matter with me and they didn't want to say it was FM. They also wanted me to talk to a psychiatrist.

    I would go there to rule out anything "serious" but dont' expect help for FM.

    Sorry.